treatment

What’s in your “chemo bag”? Gearing up for lung cancer treatment

Chemotherapy is one of the most common treatments for lung cancer, so the community on PatientsLikeMe is chatting about what’s helpful to pack in a bag for chemo appointments (join PatientsLikeMe to take part in this lung cancer forum discussion). Everyone’s experiences, side effects and preferences are different, but here are some items that people who’ve had chemotherapy say they’ve brought with them: Sweatshirt and other comfy layers, in case it’s cold in the clinic (tip: a v-neck shirt and a hoodie with a zipper can offer easier access, if you have a central line or port Fuzzy socks and/or close-toed shoes A favorite blanket and pillow from home — although the clinic probably has these on hand, it can be nice to have your own Toothbrush and toothpaste, in case you get a bad taste in your mouth (sometimes called “metal mouth”) Anti-nausea aids, like ginger candy or “pregnancy lollipops” Bottled water or whatever you like to drink (some people say iced green tea settles their stomach) — to help you stay hydrated and prevent dry mouth Hard candy to suck on (fruity, minty or whatever you like) Snacks to graze on (some clinics provide snacks, while others just provide water and coffee)… food is …

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Cannabis for PD treatment? Member Ian says it’s something to shout about

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says. Tremors “through the roof” Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and read accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of …

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Living with depression? Grab your mat: 5-minute yoga video with Jamie from PatientsLikeMe

Studies have shown that practicing yoga can have positive effects on people with depression. So we tapped Jamie – a PatientsLikeMe research assistant who is also a certified yoga instructor – to show us some poses with mental health in mind. She put together a 5-minute, beginner-level flow that you can try at home. (As always, check with your doctor before trying a new type of exercise.) “I practice yoga to manage my mental and physical health, and to bring mindfulness to my day,” Jamie says. Don’t speak yogi? Here’s a breakdown of the poses (and phrases) featured in the video, plus some of their perks: Pranayama – The practice of purposefully controlling or regulating your breath. Benefits: Settles the mind and body in preparation to practice yoga. Dirga (pronounced “deerga”) – A form of pranayama, this three-part breath involves inhaling into your lower belly (with your right hand on your belly), then into your diaphragm or midsection of the lungs, and finally into the chest (with your left hand on your chest) – and reversing this flow when you exhale. Benefits: Helps increase oxygen to the heart and lung to counteract shallow breathing – which can occur with depression …

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Let’s make fibromyalgia visible today

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.” -PatientsLikeMe member living with fibromyalgia “I am so tired of the ‘but you don’t look sick’ comments.” -PatientsLikeMe member with fibromyalgia “I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.” -PatientsLikeMe member with fibromyalgia This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women. Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with …

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Treating PTS: What members said in a recent study

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered. Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.     Share this post on Twitter and help spread the word.

“Not beyond us” – Recognizing World Cancer Day

The Union for International Cancer Control (UICC) has organized today, February 4th, as World Cancer Day. This year’s theme: “Not beyond us.” It’s about highlighting that solutions to cancer are within our reach. Awareness is not beyond us. Prevention is not beyond us. And a cure is not beyond us. The UICC is encouraging everyone to take a positive and proactive approach in the fight against cancer by working towards these four goals: Choosing healthy lives Delivering early detection Achieving treatment for all Maximizing quality of life You can become part of the World Cancer Day effort and raise awareness about what needs to be done. Whether it’s at an individual, community, governmental or global level, you can help in the fight. Visit the World Cancer Day website to learn how to get involved. On social media, you can use the hashtags #WorldCancerDay and #NotBeyondUs to share your story Add to the World Cancer Day online Map of Events and activities, and share what you’re doing on World Cancer Day Share one of the World Cancer Day 2015 posters What are PatientsLikeMe members sharing about their journeys with cancer? PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and …

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PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Online Network Connects Patients, Offers Valuable Information and Tools CAMBRIDGE, Mass.—October 8, 2014—PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools. Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.” PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and …

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It’s the Season for Seasonal Affective Disorder

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood? Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer. One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.) What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are …

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Structuring and Presenting the Patients’ Perspective at AMIA

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” – when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical …

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